Chapter 9: I’m not a child. (C2D1)

We would meet at the “club house”.

I use that term loosely. My family resided in a quaint duplex on a Royal Air Force base in England. I’ve found it on Google Maps. It’s quite cute. One street of houses, a community building, a big warehouse, a huge empty field, two large empty parking lots, a giant hill, then the enlisted housing complex. This was my playground. Never mind the playground at the end of the street. The whole base was my playground. And on the easternmost edge of that gigantic field sat three spindly trees and a bush. That was our club house. We’d taken out a rope, a bucket, and some one had pilfered a towel at one point. So we had a pulley to move things up to the one person who could sit in the tree (it wasn’t really a good climbing tree), and a flag. During the winter it was a dismal clubhouse, no coverage. But during every other season the bush arched up into the trees creating a nice little safe haven. We’d tie our bikes horses up to the trees, then putz around trying to save the world. Like any kid. 

 

I don’t know if my memory is one day, or many days combined into one, but it stands out. I’d tucked a piece of chalk into a paper towel, then put that into my pocket like always. Pulled on my blue wellies and matching parka, then tossed my bike over the back fence. It was easier than taking it through the house and felt like a secret rendezvous, like no one would know my trusty steed was waiting around the corner. I walked to one Leeann’s house, and we went out her back gate to get our bikes. So stealthy. Then we were off, in all our equestrian glory. Around the cul-de-sac, then out the other side of the road that would dump us in the field. 

 

Leeann and I had become fast friends when she moved in. She and I went to the same school, were the same age, and lived three houses away. Unlike most of the similarly aged kids on my street she was actually British. The other kids were all American, and either went to the school on the US base or went to private schools. I once had “tea” at her house, after which we played a rousing game of Monopoly on the N64. I don’t know why that matters. 

 

Some days we’d take the chalk and draw out elaborate houses on the black top, complete with stables and “courses” for our horses to run. Some days we’d go to the community center. It seemed abandoned, but  Leeann assured me we had permission. It was unlocked – so I didn’t question it. I could see my backyard from the building. But this day, this day was a new adventure. We were going over the hill.

 

In any case, I was unaware that behind the giant hill that sat the large fields  was another housing development. There were other kids on my bus, but I was the last to be picked up, and the first to be dropped off. I didn’t know the rest of the route.

 

So we set off on our bikes, across the mushy field, the air hazy with misty rain. Then the empty parking lot, our house from the previous day already washed away by the constant wetness. Then the next lot. We were speeding, trying to get enough momentum to get up the grassy hill. I could feel it in my knees, but not the way I feel my knees now. In that beautiful way when everything is working and doing what it’s been designed to do. Now my knees ache just thinking about pedaling that hard. We didn’t make it up the hill. In fact, we had to leave our bikes at the bottom as we physically climbed up, grasping at rocks to try and keep from slipping down the muddy side. The other side was easier – with long unkempt grass holding the dirt in place. We ran down the hill, feet thudding as quick as my heart. I hadn’t asked permission to go this far. I hadn’t thought this through. 

 

The other side of the hill felt different. Instead of the bright painted red and white garages there were rows of apartment buildings on the other side of a much smaller field. In my childish mind none of the scale mattered, I didn’t know the difference between an officer and enlisted person. Leeann pointed off the left – and I realized why we’d come this far. Unlike our side, this side had a shop. My mind raced back to my bike. I’d just left it there sitting at the bottom of a hill, not tied to anything. Then I thought about my parents – I’d not even known where I was going to ask permission. But it was too late to turn back. Leeann turned to me, “Did you bring any money?” I nodded. There was a little shop by my school and when I stayed after for lessons I would sometimes go there. 

 

Walking into the little shoppette I could feel my cheeks growing pink. I shouldn’t be here, I shouldn’t be here. My guilty conscious has existed for a very long time. On one row I saw two boys from my class. I didn’t know they lived so close. I smiled but avoided them. Being the only American at my school left me open to more than my fair share of teasing. Thanks to a certain president’s personal relations at the time certain children heard parents’ choice words about said president, which translated to me being called “Skanky Yank” a lot. Thankfully I was willfully headstrong and responded with that year’s “When I grow up” presentation featuring me as the president. But I digress. I walked around the four aisles, finally selecting a lemon fizzy drink and a three pieces of chocolate from the bins at the front of the store. I set the things on the counter in front of the teen-aged store clerk and waited. “Fifty-two pence.”

 

I pulled the coins out of my pocket, and felt my heart sink a little. I pushed one chocolate aside. “I only have forty seven pence.” He fished four pennies from his own pocket, adding them to my change, and then bagged up my purchased. As he handed the bag to me he paused, then threw in a brightly wrapped bubble gum stick from a bowl on the counter – another two pence I didn’t have to give him. I felt my cheeks redden and I thanked him before making a bee-line for the door. Leeann joined me moments later and I told her of my conquest – free gum! Climbing the grassy hill was hard, and I’m certain we ended up muddy coming down the mowed-side of the hill. But it’s a memory seared into my brain. Lemon fizzy drink tastes kind of like soap. In a weird good way. Cadbury chocolates melt differently in England. Wet air smells like wool, wet wool, to be specific. It’s a scent that fill your lungs, just to be chased with that soapy lemon flavor. I didn’t ever go back to that shop. It wasn’t mine. Plus I didn’t have any money. But it wasn’t meant for me. I had my fields, where my bike could be a horse and chalk was enough to create an entire mansion – and it was wet, and beautiful. That was 15 years ago.

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I don’t think people do it on purpose. I don’t think they are trying to be patronizing, or hurtful – maybe it’s even meant to be a compliment. My age. Like a number can define a human being so completely. “Only 25.” You see, my age is always accompanied by the word “only” because I am on average 10+ years younger than most of my peers.

But I’m over the number. The number doesn’t matter, and I feel like experience wins out. My two years as a mother are just as valid now as they would be if I’d waited. My experience buying a house is valid. I’ve worked, though not as long as some, as a professional in varying fields. I’ve performed at Carnegie Hall, bought a number of cars, filed my own taxes, gone to the movies by myself, painted my dining room, changed the filter in my AC system, the list gets more boring and even more mundane. I’m doing the same things all the grown-ups are doing, and yet somehow I’m not an adult.

Here I am doing the same mundane things, and faced with the reality of mortality. So I’m just going to put it out there. I’m an adult. I’m not “only 25″. I face the same fears for my family – if not more so. I face the same fears financially – if not more so. And I face the same challenges every day – if not more. Because not only do I get to do normal adult things, but I get to do them while I have cancer.

It’s not that I want to be old or waste my youth. It’s that my life is not trivial because it is not as long as someone else’s.

Plus, I’ll be 26 in a few weeks. Boo-ya!

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Medi-port hooked up and ready to go.

We are in Cycle 2 now. Last Wednesday I went back to the infusion center and unlike my first cycle that was drawn out over four days, all of my infusion was done on one day, then I had to go back Friday for the Neulasta shot. We arrived early, and honestly – the day is a blur. I didn’t have any reactions to the chemotherapy drugs, but the benadryl really did a number on me. I hate that feeling – it’s too close to numb. A forced tired that I’m not in control of. With so little in my control, I cling to what I still have. Getting to be awake for a majority of the day is one of those things. So I was in and out of consciousness, but mostly I just rested while Brandan clacked away on his laptop.

Then I went home.

It was very boring. I slept the whole time.

My side effects have been… different. The first cycle we worried about tumor lysis. Ie.: too much tumor dying too fast and clogging up my kidneys. That was a painful process, as massive cell death is understandably painful. I’m not having so much of that pain this time around. Unfortunately – I am dealing with some nausea. It’s not the worst. I don’t ever feel like I’m actually going to throw up… just very close, so it’s nicer than morning sickness. I also have medication to help – another “win” for modern medicine.

I’m not out of the woods yet, last cycle my “peak” worst day was day 7, which is coming up soon. My Mama is gonna come play Mama for me in anticipation of that difficult day. Having family nearby makes this a million times easier than it would be if we lived anywhere else.

A warmer hat as we packed up to leave. :)

 

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And I guess one more side effect: I’m hairless now. I had cut it, per my last update, as my hair had started coming out in handfuls. It was good to cut it, and I’m glad I did. I kept a hat on most of the day, then spent 20 minutes in the evening pulling out piles of hairs. Within a week I was down to what I like to call “Grandpa hair”… as it was even but sparsely distributed over my head.

Quite possibly the most attractive photo of me yet! Right before I let Brandan cut it all off. Ginny was informing me of how silly I looked! Go figure!

 

It was bad. It looked bad. It was making me feel bad. The hair needed to go. So we just cut it off. We planned it out, and had Ginny there. I cut Brandan’s hair like usual (those clippers have paid themselves off at least 3 times and we’ve only owned them for 10 months!), then as Ginny and I laughed at my silly hair we said it was Mommy’s turn. She has handled it really well. I think the sparse hair was scarier for her too. She commented a lot on it, telling me how silly my hair looked. Then she’d nuzzle into my chest and tell me how pretty I am. She’s very perceptive. Now with the hair gone she doesn’t comment on my hair at all, though she’s still telling me I’m pretty. I’m not sure where she picked that phrase up, perhaps from my sweet husband, I’ll take it.

 

 

Mostly bald with a weird hair tan line!

 

Yesterday I saw a picture of someone’s child and I became irrationally angry. I was angry at the kid’s mom. Why does she get to feel safe in knowing she’ll see her children grow, while I cry myself to sleep wondering if I’ll even see the next ten years. When my daughter climbs on top of me and says “I love you too Mommy” – her half of the phrase – and I can’t help catching my breath to stop the catch in my throat as I respond. “I love you baby.”. I’m trying to embrace what I have though. And really, what I have is more. My numbers are real. I don’t need to worry about dying in a car accident or some other catastrophic occurrence. Not that those don’t exist for me, but they don’t matter. Instead I get to know that there is something trying to kill me now. It’s oddly beautiful, knowing and not knowing. It makes me cherish every second her sweet little body is pressed against mine. She’s being forced to grow up too fast. I’m ready to be done with cancer so we can resume our exhausting trips to the library and conversations that don’t have to do with Mommy’s tummy hurting or her hurried words of comfort. She shouldn’t have to comfort me.

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  • I acknowledge that my problems don’t make any one else’s problems less valid. This is important. At the same time, if you yell at your kid in the grocery store because you expected your two year old to sit perfectly still with no entertainment for an hour then I probably want to shake you.
  • My mom made me cheesecake for Valentine’s Day.
  • My life feels more in order than it ever has before.
  • I ache for a time when I can just think about the future without adding an obligatory “if” to the front of my thoughts.
  • There are 3 inch Jessica hairs all over my house. Everywhere. It’s annoying, but not as annoying as finding the long ones.
  • I’ve lost some ability to multi-task. I can’t listen and think. I can’t hold two conversations. Part of this might just be stress, but it’s frustrating.
  • I am tired of being tired.
  • I selfishly love the extra snuggles I get from Ginny when we watch a movie in the afternoon so I can take a nap.
  • I’m over-the-moon thankful that Brandan can work from home through all of this.
  • I cry every night. Some times before I go to bed. Some times in a weird wakeful period that haunts my nights. Too early to be awake, too late to take more meds. My brain starts thinking, and it’s hard to shut off again.

 

It’s hard to label this experience. It’s not easy, but it doesn’t feel hard. It feels unfair, like in elementary school when the kid in front of you takes the last pepperoni pizza slice. Those square slices. There’s nothing to be done, nothing can be changed, you’re stuck with cheese pizza. Until next Friday. So here I am, just waiting for another pizza day to roll around. Another day, months away, where everything will be fine again. But in the meantime, cheese pizza will suffice. At least I have something. I’m not sure what pizza represents – some grand scale model of what life is, and what life should be? Or what I want life to be? Or maybe just what I think I deserve in my life. And if that last one is the case, then I would gladly settle for cheese if it means I get to have a million more Fridays. I am happy, because my life – all 25 years of it – is amazing and full of good things, and good people. I have everything I need, and more.

 

7 Comments to “Chapter 9: I’m not a child. (C2D1)”

  1. Jessica, you are beautiful. Your words are beautiful, and move me beyond belief. Daily warm, healing thoughts and prayers for you and your sweet family!! ????

  2. Jessica, I hope that you feel as well as can be expected these next few days and that you have a nice long time to enjoy Ginny. I wanted to tell you how much I have ‘enjoyed’ (that doesn’t seem the right word to use, but I can’t find another, better one) you writing. The little stories of life before have been beautiful.

  3. You are so wise for being “only 25″, you have gone through more than people many times your age have and are pulling through just beautifully. I am so proud of you. A suggestion, you may want to ask the doctor to cut your Benadryl back a little, I did because I was falling asleep too much also, and it made a difference. I pray everyday things will be better for you. Love you.

  4. Jessica,
    I’m sorry your hair is everywhere. That sucks. Your optimism and stories are a blessing to all of us and your family. They are lovely. I want to do something for you. More then just remembering you in our prayers (however my girls ask for you to be blessed in all our family prayers. I think you’re blessed more than the food at our house). It hasn’t come to me yet, but I’m thinking (slow thinker) so let me know if and when you need my help. I’m ready. We love you girl.

  5. I just commented on your facebook “hair” post before reading your blog. You are beautiful without hair. I have never looked good in hats so I envy how beautiful they frame your face. Don’t apologize for your feelings. They are real and you own them. You’ll get thru this and triumph!!

  6. Jessica, I’m reading your blog at 3am while I breast feed my new son. Your words, thoughts and feelings touch me deeply. I haven’t seen you in years but I’m so in awe and proud of how you’ve grown up into such a bright and insightful woman.
    You can fight this, my family think of you everyday, stay strong.

  7. Hi Sweetie. You know me from Reddit as Married_A_Mo and I know you as my Hippie. You are about the age of my youngest daughter and my heart aches for you. I’m in San Diego, so I can’t swing by with food or hang out with Ginny while you rest (if you can), but I want you to count me as one of the many MANY people who are pulling for you. I have confidence that you can beat this stupid disease. Please don’t hesitate to let us all know when you need a pick-me-up … I promise we won’t think you’re whining. (Well, you “might” be whining, but if you aren’t entitled to do so every once in a while, who is?)

    Hang in there and keep blogging, OK?
    XOXO

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